NPH is a tough road.

Posted by barbwith3cats @barbwith3cats, May 3 10:58am

My husband has NPH. In the beginning he was diagnosed with memory loss and executive function issues at 64. His MRI showed enlarged ventricles. For the next 3 years he slowly declined. He couldn’t work, stopped driving, couldn’t play golf without falling and became withdrawn and overly emotional. In the last year he was struggling to lift his feet when he walked, fell a lot due to imbalance, constant headaches, emotional upset, extreme fatigue, sporadic urinary incontinence, brain “fog” and confusion. With NPH there is no intervention until your symptoms meet a certain level. His diagnosis is decompensated NPH.
After a large volume lumbar puncture, my husband could walk without a walker, the falls stopped and he said he felt the brain fog had cleared so he could think again. For the next 10 days he was remarkably better and now all the symptoms have gradually returned. Due to all of this, we have scheduled him to have a ventriculoperitoneal brain shunt with magnetic adjustment implanted under the scalp. While the shunt is a scary proposition, we can see light at the end of the tunnel.

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sandrabum | @sandrabum | Jun 24 3:23pm

In reply to @ortina2023 "I’m curious about the timeframes - lumbar puncture test came first, then how long was it..." + (show)

Hi, so the lumbar drain happened 1 week later. My surgery took place the following week. It happened so quickly. I laugh because we also had travel plans. We had a 2 week holiday in Africa 3 weeks after the surgery. My surgeon agreed, he just required that I saw him 2 weeks after the surgery to make sure everything was ok.

I also wanted to let you know, I did not have any problems right after the surgery. The only pain medication they gave me was 2 tylenol every 6 hours. Honestly, I felt better right after the surgery, I could walk well immediately and they discharged me the very next day. I did take a couple of days to go back to work.

My husband I came back from Africa. I have only been vigilant on paying attention to any sort of relapse. We were so busy that I was tired. I think this may have had an effect on things like walking or cognitively. I am still walking way better than I was before I had my surgery. Also, my surgeon told me he had my shunt at the lowest setting and when I see him next, he will make adjustments based on my observations. Traveling was no problem, even going through security 🙂

ortina2023 | @ortina2023 | Jun 24 4:02pm

This is so good to hear! I’m so happy for you! If my husband can walk, play golf, and think clearly again that will be wonderful, and the incontinence has been a huge embarrassment so if that disappears all the better! Thanks so much for giving us hope!

sandrabum | @sandrabum | Jun 24 6:41pm

In reply to @ortina2023 "I’m curious about the timeframes - lumbar puncture test came first, then how long was it..." + (show)

Just one other thing. I have read in the research I have done on NPH, that it is difficult to diagnose because it has similar symptoms such as Parkinson's, Alzheimer's, and Dementia. If I was not as aggressive about finding out what was wrong with me, I could have just chalked it up aging and begun to continue to deteriorate and my life would have been shortened. The reason the timeline was so quick was because my husband became pushy, and because of our trip to Africa and asked how soon i have the surgery. Plus I wanted the surgery because I had been so distressed and tired from not being able to walk, not have my memory gone and the incontinence!! I have realized we have to be advocates for our own health. I was my mom's and my dad's advocate because they were not. I am very grateful to my surgeon for being thorough and moving the timeframe quickly. I had a GREAT holiday in Africa, because I could walk!!

ortina2023 | @ortina2023 | Jun 24 9:44pm

My husband’s doctor scheduled an MRI and that showed the enlarged ventricles. He referred him to a neurologist who diagnosed NPH, but by then considerable time had passed. My husband decided then the symptoms weren’t too bad and he didn’t do the shunt surgery because to him it sounded frightening. Fast forward a few more years and the symptoms were much worse. He was falling, incontinent, confused, and frightened. Another MRI showed the ventricles very enlarged. We wished we had done something years earlier in hindsight. We were in a small remote town in northern California with no specialists nearby able to do the surgery, so we moved back to Oregon and I FINALLY located a neurosurgeon with experience in shunt surgery and scheduled the high volume lumbar puncture test he will have tomorrow near Portland. I will push for the surgery as soon as possible.
Thanks for your input. It has been very helpful!

ortina2023 | @ortina2023 | Jun 28 8:59am

In reply to @ortina2023 "My husband, 77 years old, is going through the same. He hasn’t had the lumbar puncture..." + (show)

My husband’s lumbar puncture test didn’t go as we hoped. Three test tubes of fluid were used. The order was for 30cc’s of CSF to be drawn. They stopped the procedure after only 6.5 cc’s due to “frank blood” in the spinal fluid. Samples of the bloody spinal fluid were sent to the lab and we are waiting for the results now.
He has some slight improvement even after only 6.5 cc’s was drained. We are hoping the blood was from a blood vessel being nicked during the needle insertion rather than a more serious cause. And so we wait…

bluerock1 | @bluerock1 | Jul 10 4:26am

Gdluck

jtkindness | @jtkindness | Sep 19 4:47pm

I hope everyone is now on the road to recovery. It sounds like the road to diagnosis is similar for many of you. My husband had the VP shunt placement on July 11, and we are in the process of adjusting the shunt valve. Overall, things have gotten better. We are hoping that there is a "just right" value level adjustment. He has the Codman Certas shunt and is now at setting # 5. Does anybody know how long it takes to get to the "just right" setting?

Sending healing energy your way < 3

barbwith3cats | @barbwith3cats | Sep 19 6:34pm

Update: My husband is doing great physically since his codman shunt placement back in May. He went from barely walking to now I can’t keep up with him on walks. The brain fog has disappeared, but some mental skills are slower to return. Multitasking is still not regained. We knew it could take up to a year before he returns and to a “new” normal. His shunt is in a 7, so we have room to adjust in the future.

luvnursing52 | @luvnursing52 | Sep 20 10:03am

I had a Certas Codman shunt placed on 8/13 for NPH after having symptoms for years. But I started falling, so that alarmed the neurologist and decided to do a large volume spinal tap. My symptoms improved right afterwards, but after 3 days I was back to being wobbly again. He decided to set the shunt at a 5 initially, but 2 weeks later had to turn it up to a 6. My symptoms still have not improved but I haven't fallen. My balance is awful & I'm not motivated to do much of anything. And the headaches are worse.
I'm getting somewhat discouraged at this point, but I hope the mood issues will improve. The incontinence has worsened as well. I know it can take a while for the brain to adjust after a setting change, but I'm hoping this is not my 'new normal'. I see the surgeon again on 10/8, so we'll see what he says.
To complicate matters, my husband has transverse myelitis that affects him daily and there is no treatment or cure. It's pretty rare. He has to take Vicodin 3 times a day to be able to function. So we're quite the pair right now!
I try to stay positive and stay social.
Can anyone else 'hear' their shunt buzzing occasionally? It doesn't happen every day but it's a odd sensation.

sandrabum | @sandrabum | Sep 23 7:29pm

I just had my first shunt adjustment. My VP shunt is Medtronic . I had my surgery in May. It was adjusted from 2 to 1.5. Before the adjustment, I began to have small relapses in my gait and cognitive. The adjustment helped, but could I improve with more adjustment? I feel as though my expectations are that i would be fixed 100%...that I'm back to my 20someself! Haha. My shunt has been a miracle for me.